Fighting self: How people live with autoimmune diseases
Autoimmune diseases are hundreds of different diagnoses. They arise as a result of the fact that the immune system mistakenly attacks its own tissues or organs - but the reasons for this are often unknown, and the manifestations can be very different. Among the autoimmune are very rare and more common diseases; We talked with patients and asked rheumatologists about when to seek help, how dangerous self-treatment is and what difficulties people face with autoimmune diseases in Russia.
No one doctor for everyone
The human immune system normally recognizes "his" and "alien" - but sometimes this ability may be impaired. Then the immune system perceives its own tissues or cells as alien and begins to damage or destroy them. As a rheumatologist Irina Babina notes, almost any doctors encounter autoimmune diseases: gastroenterologists, pulmonologists, nephrologists, endocrinologists, neurologists, dermatologists. In such a situation, mainly one organ or one system — for example, the skin or the thyroid gland — is affected; therefore, they are engaged in specialists of a particular specialty. But there are autoimmune diseases in which absolutely all organs and systems are damaged - they are called systemic, and rheumatologists work with them. These are, for example, systemic lupus erythematosus or Sjogren's disease. Rheumatologists also work with patients who have a musculoskeletal system, for example, with rheumatoid arthritis.
The patient may not understand who to contact, and there is a long-established system in the world: a person goes to a general practitioner (general practitioner, or GP), who determines which test to conduct and which narrow specialist to send. In Russia, the function of a general practitioner is usually performed by a general practitioner. True, this system is not ideal and there are two extremes in it. It happens that everyone who is difficult to make a diagnosis is sent with the words: "Go to a rheumatologist, you have some strange disease, let them figure it out." After the examination, a disease of a completely different profile may be detected - infectious or, for example, oncological. The opposite situation is even more offensive - when precious time is lost, several months or years pass between the first symptoms and the contact with a rheumatologist. Oleg Borodin, a rheumatologist at the Atlas Medical Center, adds that this is a global problem, and there are few good general practitioners not only in Russia. Physicians, in principle, should have a broad outlook, constantly improve and understand all the new nuances.
Associate Professor, Candidate of Medical Sciences, Rheumatologist at the K + 31 Medical Center Ilya Smitienko notes that the majority still do not know who the rheumatologists are and what they are doing. There are many rheumatic diseases, more than a hundred, and they are very diverse; most common are osteoarthritis, osteoporosis, rheumatoid arthritis, gout, ankylosing spondylitis, psoriatic arthritis, fibromyalgia, Paget's disease. It is important to understand that rheumatic diseases are not always autoimmune; for example, gout is a problem in the joints associated with impaired uric acid metabolism. Rheumatologists also treat and diagnose rare autoimmune diseases that affect the entire body at once, including systemic vasculitis (inflammatory diseases of the blood vessels) and connective tissue diseases such as systemic lupus erythematosus. It may seem illogical, but immunologists do not deal with autoimmune diseases - they are responsible for allergic diseases and immunodeficiencies.
Four years ago, I started having joint pains, so unexpectedly that I was scared and went to the therapist. For two months I was dragged around the cabinets and forced to undergo various tests, including paid ones. Over time, in addition to pain in the joints, hair began to fall out, sweating increased, and because of the huge amount of anti-inflammatory pain, the stomach began to hurt.
Soon came gastritis, then erosive damage to the esophagus, and a year later the gallbladder filled with stones by three-quarters and the question arose about its removal. I spent all my free time either at home or in clinics; I stopped communicating with friends. Money for new clothes, basic necessities and a cafe or cinema has ceased to be enough. This year, my gallbladder was removed, and then the glands - they thought that they were the starting point for arthritis. Now the problem is that I can not get to a free rheumatologist: the test results have returned to normal and the therapist’s direction cannot be obtained.
Risk group - women
Rheumatic diseases are more common in women, although not all; for example, men and women suffer from psoriatic arthritis equally often. Why fails in the immune system - just no one knows. A harmful role is played by harmful bacteria and viruses, as well as heredity - but it is not known why some people have a genetic predisposition to the disease, while others do not. For some factors, it is just clear that they play a role - but which one is not yet clear.
According to Oleg Borodin, one of these little-studied factors is gender and the corresponding hormones. The expert explains that the immune system of women is more perfect than the male one, and women, for example, more easily tolerate infectious diseases. And since immunity in women is "stronger" than masculine, then it is more often exposed to disruptions.
I got rheumatoid arthritis at four years old, but I was diagnosed only at thirteen. I lived in a small town in the Chelyabinsk region with an appropriate level of medicine. When at night my legs began to hurt terribly, I was taken to a regular children's clinic. The children's rheumatologist said that it was “growing pains”, no drugs were prescribed, no tests were performed. They said just wait.
Hard to recognize
Rheumatic diseases are among the most difficult to diagnose and treat. They manifest themselves very differently, and it is difficult to suspect them, especially if we are talking about rare diseases or those that are slowly progressing. For example, pain in the joints or high fever are not specific — that is, they may be signs of a wide variety of health problems. Before the cause of the ailment is found, a lot of examinations will have to be carried out - after all, you must first eliminate the more common and obvious causes.
Of course, these difficulties also affect the psychological state of patients. According to Irina Babina, anyone wants to understand why he fell ill and whether children and relatives can prevent this disease - but today doctors have no answers to these questions. At the same time, the prospect of taking drugs is scary - in rheumatology these are drugs with serious effects, including side effects, and the treatment requires constant monitoring by the doctor. A separate difficulty is to understand and accept the fact that now you have to deal with health all the time, all your life.
In 2002, I started to feel bad: my legs hurt, my head was short of breath, everything blurred before my eyes. I went to the doctor, they did some tests, but they did not find anything. Examined the thyroid gland - everything is normal. Sent to the Institute of Immunology - they made skin tests for allergies, did not find anything dangerous. The dyspnea continued, and the doctor laughed at my complaints about the fear of suffocating at night and asked no one else to talk about it - otherwise they would be sent to an asylum.
Then, for almost ten years, I didn’t go to doctors, because when I first tried, I wasn’t found anything. At the same time, I constantly felt bad, but in 2010 everything worsened: the pressure was constantly jumping, the joints could barely move. I could not go to the doctor in the winter, because when I tried to put on a hat, my head would split. At night, my whole body was numb, and dry mouth was almost unbearable. In the morning, I first opened the door - I was afraid that I would faint and not have time to call an ambulance, and hoped for the neighbors. This went on for several months.
Medications and difficulties with them
Medicine is not the most exact science, and, by and large, the unequivocal causes of pathology are understandable only with infections or injuries. True, for successful treatment, the cause can be and not to know - it is enough to understand the mechanism, that is, how the process is developing. Since we are talking about the attack of the body's own immune system, the essence of the treatment is to suppress this attack. To do this, use immunosuppressive drugs - these include drugs from different groups and generations, including corticosteroids (hormones) and cytostatics (drugs that inhibit the processes in the cells and are also used in oncology). In addition to the therapeutic effect, they have negative effects; Considering that therapy is required for a long or even life, these effects must be constantly monitored.
There is also another group of drugs: these are modern biological products obtained by genetic engineering. With their help, you can influence the subtlest mechanisms of autoimmune reactions, although they are not without side effects (however, not a single medicine in the world is not deprived of them at all). Treatment with biological agents can cost 50-100 thousand rubles a month and should be long-lasting, and in order for it to become available at the expense of the state, you need to go through many formalities, including disability. It may take several years - the disease does not wait and during this time it progresses. At the same time, not all modern preparations are generally registered in Russia, often their appearance is several years late. People who have the financial and physical ability, buy drugs in other countries.
Now we can talk about decent success: the same systemic lupus erythematosus was considered fatal half a century ago, and pregnancy was out of the question - it led to the death of both the fetus and the mother. Today, women with lupus work, lead an active life and have children. True, for some rheumatic diseases, there is still no medicine with proven efficacy. Separate complexity - processes with the so-called catastrophic, or lightning, development; in a very short time, against the background of complete health, severe insufficiency of many organs develops at once. To determine the diagnosis and start treatment, the doctor has a few hours or even minutes - and in such situations, the mortality rate is still very high.
Experts agree that the active participation of the patient, his collaboration with the doctor is very important. Work is under way to make treatment more accessible, and common and severe rheumatic diseases are included in the lists of concessional medicines. True, there are difficulties here too: often, instead of the original drugs, generics are included in the lists, which theoretically are just as effective, but in practice they behave imperfectly.
Irina Babina talks about a patient with systemic lupus erythematosus who needed a drug that is not on the lists. The Research Institute of Rheumatology gathered a commission of reputable doctors and scientists to investigate this particular case, and as a result, the woman began to receive the necessary medicine for free. Probably, once such problems will be solved in working order, but so far such cases are rare. According to Oleg Borodin, another problem is the disappearance of some drugs from the market, which for one reason or another are not renewed in the country. If the medication that is well-suited to the patient disappears, doctors should look for a replacement, re-check the tolerability and effectiveness - and there is no guarantee that this replacement will be equivalent.
A couple of times there were interruptions in the drug, and I managed to knock it out at almost the last moment. You can say I was lucky. During the treatment, I met several people who simply stopped giving out similar drugs - and some of them cost 40 thousand rubles, others - 80. Of course, they cannot afford to buy this for the majority of Chelyabinsk residents. Until now, before each receipt of a new batch of the drug (that is, four or six times a year), I experience wild stress: what if they don’t? Suddenly they won't have time to bring it and I will have an aggravation?
A year and a half ago, due to frequent recurrences of uveitis (eye disease, often accompanying rheumatoid arthritis), I was transferred to another medicine. It is more expensive, it needs to be administered every two weeks (the previous one - once every two or three months), and stored only in the refrigerator (because of fear for the expensive drug, I even bought a new refrigerator). This significantly limits my travels, as cooler bags are bulky and unreliable, and I haven’t found any other way to transport the drug.
Self-medication
With the advent of the Internet, it has become easier for people with rare diseases to find support. There are groups for patient communication on websites, forums and in social networks - and, unfortunately, in addition to support and communication, there you can find a lot of tips in the spirit of "stop poisoning yourself with chemistry" and recommendations to go to raw foods or go to an osteopath. Oleg Borodin notes that self-medication is typical for the period of denial of the disease, when a person does not yet understand that the situation is really serious. People are afraid of side effects - and it is difficult to realize that they may not develop, but the disease is already real and harmful to health. Folk remedies may at first relieve the condition - a significant role is played here by the placebo effect - but at the same time the disease continues to progress, and precious time is lost.
Irina Babina recalls a patient with systemic scleroderma, who applied almost ten years after the onset of the disease. With this diagnosis, there are swelling of the hands and forearms, inflammation of the joints, chilliness of the hands and feet, periodically arising spasm of the blood vessels with blanching, and then blue fingers, non-healing painful ulcers on the tips of the fingers. “The most terrible discovery awaited me when inspecting the feet, - the doctor notes. - Fingers were completely black, because of the cessation of blood supply, their dry gangrene developed. with chamomile. The result was an amputation of the toes of both feet. "
Self-treated not only by folk methods. According to Ilya Smitienko, there are cases of abuse of hormonal anti-inflammatory drugs: prednisone and its analogues. When a person's joints become very inflamed, these hormones temporarily give relief, and it seems to a person that he did everything right. But in the end, instead of treating the disease, only the smoothing of symptoms occurs - but undesirable effects may include bone fragility and the development of diabetes.
When I finally got to the polyclinic and they began to examine me, the therapist was very excited about the results of the blood test: she said that one of the indicators was very deviating from the norm, and this is the case with pneumonia, cancer or systemic diseases. I was sent immediately to several doctors, including an infectious diseases specialist and a neurologist. A hematologist suspected myeloma (a malignant bone marrow tumor); I was very scared.
I went home to die. Then she decided that a healthy diet would help - she constantly made fresh juices, ate everything boiled, nibbled apples. But then I donated blood for complicated analysis, and it turned out that I have no myeloma. Then, I do not remember why, I was again at the neurologist - and she said that this happens in rheumatic diseases. Again the therapist, again tests, and only after that I managed to get a referral to a rheumatologist. After hospitalization and heaps of other examinations, it turned out that I have Sjogren's disease — an autoimmune disease.
Social difficulties
It is impossible for a healthy person to imagine a situation where the most common action — chewing, shaking hands, typing on a keyboard, walking — is accompanied by discomfort or sharp pain. To get assistive devices for free like a wheelchair, you have to go around a lot of instances - patients joke that a person with a disability should have an enviable health in order to receive social benefits. It is no secret that little is equipped with ramps and lifts - and sometimes they are made as if they were designed for stuntmen, and not for people with disabilities. In addition, those who often take sick leave, have problems with work.
And even this is only the tip of the iceberg, there are discussions of everyday difficulties that people face at home or during hospitalization on the patient forums. The list of “what to take to the hospital” includes such unobvious things as warm woolen bandages to warm the hip joints, a tray that can be put on a chair and put things on it (so as not to reach for an uncomfortable standing bedside table), as well as dishes, a small kettle, a lot of napkins and toilet paper - it is difficult to trust the cleanliness of the toilets in Russian hospitals.
До сих пор не существует способа объективной оценки боли - то есть у врачей нет возможности ни подтвердить, ни опровергнуть её наличие или определить интенсивность. Наша героиня с фибромиалгией рассказывала, что оформить инвалидность ей не удаётся, потому что боль не регистрируется никакими объективными приборами. Это заболевание на стыке ревматологии, неврологии и психиатрии - и часто при боли лучше всего действуют психотропные средства. At the same time, according to Irina Babina, the need to take them is not always adequately perceived: the patient regards the referral to a psychiatrist as mistrust, refuses to be treated, and the pain only increases.
The number of doctors that I visited in four years is difficult to even calculate: general practitioners, endocrinologists, dermatologists, gynecologists, rheumatologists, neurologists, otolaryngologists, surgeons are only part of the list. Every day I struggle with pains in muscles, joints, stomach - all without success. Huge expenditure of money for some drugs develop into others. There is no improvement, but there are new diagnoses. Trying to cure one thing, I kill something else.
My life has changed, I can’t go out for a long time, I walk to the pharmacy, clinic or store, have difficulty returning, and then fall on the bed with incredible shortness of breath, dizziness, tachycardia and panic attack. The bottom line is a huge bouquet of various diseases, a large amount of drugs in the first-aid kit, and the morning begins with the thought that no one can help me except myself.
How to treat in other countries
Experts agree that the knowledge and approaches of our doctors are not inferior to those of the West, but the structure of the health care system leaves much to be desired. It is difficult to treat pain when opioid analgesics are shown to a person, but the system does not allow a rheumatologist to write them out. Problems with the availability of modern biological products, monstrous bureaucracy in the registration of disability or any benefits.
A separate difficulty for Russian patients is that they do not have comprehensive psychological support. Any chronic disease is a great stress, and it is difficult for a person to realize and accept that he is unwell, that he will have to be examined frequently and be cured all his life. In rheumatic diseases, the body and appearance change, the perception of oneself, many restrictions appear - for example, one cannot be under the bright sun. Ideally, you need support groups, help to overcome stress. While this role is played by groups in social networks: patients share tips on how to stop reacting to chuckles, comments, or slanting eyes, and many say that the dissimilarity in the passport photo raises questions at airports.
My main claim to Russian medicine is that there are practically no doctors here who would operate with such concepts as "evidence-based medicine" and "patient's quality of life." Those who at least tried to explain to me what was happening to me and how they were going to treat me, rather than just throwing me with extracts, were less than a dozen in twenty-six years of illness.
Photo:Sander - stock.adobe.com, Anna Lupanova - stock.adobe.com, Tim UR - stock.adobe.com